A-Z of Conditions - The Brain Charity

The Brain Charity

Primary Progressive Aphasia

Name	Primary Progressive Aphasia
	see Fronto-temporal Dementia (F.T.D.)

Progressive Supranuclear Palsy (P.S.P.)

Name	Progressive Supranuclear Palsy (PSP)
Related to/Also known as	Steele-Richardson-Olszewski (SRO) Syndrome Corticobasal Degeneration (CBD)
Symptoms of PSP	PSP is a progressive brain disease, leading to the death of nerve endings (neurons) in the area of the brain controlling balance, vision, movement, speech and swallowing. Symptoms reflect problems in these areas; however, the severity and progression varies considerably from one individual to another.
Types
Useful national contacts	PSPA Helpline: 0300 0110 122 https://pspassociation.org.uk
Children & young people	Progressive Supranuclear Palsy (U.S. Child Neurology Foundation) https://tinyurl.com/rbhyzoc
Online resources	PSP & CBD and Coronavirus (PSPA) PSP & CBD and Coronavirus Progressive Supranuclear Palsy (NHS Choices) https://tinyurl.com/lpvclo6 Corticobasal degeneration (NHS Choices) https://tinyurl.com/sq9oqw5 Living with a condition (The Brain Charity)
News and events
Our resources	The library at The Brain Charity has a range of resources on Progressive Supranuclear Palsy and on a wide range of disability-related issues. This includes a copy of the PSPA booklet "An Introduction to PSP and CBD"

Reflex Sympathetic Dystrophy (R.S.D.)

Name	Reflex Sympathetic Dystrophy (RSD)
	See Complex Regional Pain Syndrome (CRPS)

Restless Legs Syndrome (R.L.S.)

Name	Restless Legs Syndrome (RLS)
Related to/Also known as	Willis-Ekbom Disease Ekboms Syndrome Wittmaack-Ekbom syndrome
Symptoms of Restless Legs Syndrome	RLS is characterised by intense discomfort within the legs, and an unremitting urge to move them. It results in what may be described as a crawling, bubbling or jerking feeling in the legs and other part of the body. Movement relieves the sensation, but the relief is short-lived.
Types
Useful national contacts	RLS-UK Helpline: 01634 260483, 9-11am www.rls-uk.org
Children & young people	RLS in children (RLS-UK) www.rls-uk.org/rls-in-children
Online resources	Restless legs syndrome (NHS Choices) https://tinyurl.com/y7qjhwf7 Restless legs syndrome (Patient.info) https://tinyurl.com/y8lhoqwr Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Restless Legs Syndrome and on a wide range of disability-related issues. Visit our library to read Restless Legs Syndrome by K. Ray Chaudhuri and others. Or have a look in your local library for this book.

Rett Syndrome

Name	Rett Syndrome
Related to/Also known as
Symptoms of Rett Syndrome	Rett Syndrome is a complex neurological disorder that mainly affects girls. It usually becomes evident in the second year of life, and leads to profound mental and physical disability.
Types
Useful national contacts	Rett UK www.rettuk.org Tel: 01582 798911 Find your nearest support group: https://tinyurl.com/ybvxhwze Cerebra, UK charity for children with neurological disorders https://cerebra.org.uk
Children & young people	Family Companion (Rett UK) https://tinyurl.com/y3zl9so2
News and events
Online resources	The Brain Changer Arts Project (The Brain Charity) Easy-Read guide to Coronavirus from Mencap Rett UK Information, Advice & Resources – COVID-19 (Coronavirus) (Rett UK) https://www.rettuk.org/covid19/ Rett UK Information, Advice & Resources – COVID-19 (Coronavirus) (Rett UK) www.rettuk.org/covid19 Rett syndrome (NHS Choices) https://tinyurl.com/yc3pfvkh Rett syndrome (Contact, charity for families with disabled children) https://tinyurl.com/u8q5y8x Rett Syndrome Information Page (U.S. National Institute for Neurological Disorders and Stroke) https://tinyurl.com/yc8a8kfo Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Rett Syndrome and on a wide range of disability-related issues. Visit our library to read theRett Syndrome Handbook: In words you can understand from those who understand.

Sarcoidosis

Name	Sarcoidosis
Related to/Also known as	Neurosarcoidosis
Symptoms of Sarcoidosis	Sarcoidosis is a systemic disorder, which can affect any organ of the body, most commonly the lungs, skin and eyes. Cells cluster together in tiny nodules or sarcoid granulomas, as an inflammatory response to infection or another cause. The disease can range from a mild, self-limiting condition to a severe, chronic and progressive illness.
Useful national contacts	SarcoidosisUK (formerly SILA Sarcoidosis and Interstitial Lung Association) http://sarcoidosisuk.org UK Toll Free: 0800 014 8821 Find your nearest support group: https://tinyurl.com/yd7s87sx
Children & young people	Sarcoidosis and children (SarcoidosisUK) https://tinyurl.com/y4z55pf9
Online resources	NHS Coronavirus advice: If you have sarcoidosis and you're worried about coronavirus, you can get advice about coronavirus and sarcoidosis from the British Lung Foundation. Coronavirus (Covid-19) (SarcoidosisUK) www.sarcoidosisuk.org/information-hub/coronavirushome Sarcoidosis (NHS Choices) https://tinyurl.com/lncfbpb Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Sarcoidosis and on a wide range of disability related issues.

Sjögren's Syndrome (S.S.)

Name	Sjögren's Syndrome (SS)
Related to/Also known as
Symptoms of Sjögren's Syndrome	Sjögren's Syndrome (SS) is an auto-immune disease, in which the immune system attacks the salivary and tear glands, leading to dryness of the mouth and eyes.
Types	Sjögren's Syndrome can occur as a primary disorder (Primary Sjögren's Syndrome) or secondary to another connective tissue disorder such as rheumatoid arthritis.
Useful national contacts	British Sjögren's Syndrome Association www.bssa.uk.net Helpline: 0121 478 1133
Children & young people	Sjøgren's syndrome in children, juvenile Sjøgren's syndrome (Connective Tissue Diseases website, Norwegian, in English) https://tinyurl.com/y4atrevm
Online resources	Covid-19 (Coronavirus) (BSSA) www.bssa.uk.net/live/news/news61.asp Sjögren's syndrome (NHS Choices website) https://tinyurl.com/y8worzsz Sjögren's syndrome (Versus Arthritis) https://tinyurl.com/rn986cp Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Sjögren's Syndrome and on a wide range of disability-related issues. This includes a copy of the booklet "Sjögren's Syndrome" by Arthritis Research UK.

Spina Bifida

Name	Spina Bifida
Related to/Also known as	Spinal Dysraphism Hydrocephalus
Symptoms of Spina Bifida	Spina Bifida (split spine) is a fault in the spinal column, in which one or more of the vertebrae fail to form properly, thereby leaving a gap. It occurs early in pregnancy and is therefore present at birth.
Types	Spina Bifida Occulta is a very mild form, which may only be evident as dimpling of the skin or a hairy patch. Spina Bifida Cystica is a form where a sac or cyst is visible on the back. If the sac contains nerves and part of the spinal cord, it is known as a Myelomeningocele and will result in some degree of paralysis and disability. If it contains tissue and cerebro-spinal fluid, it is called a Meningocoele and is unlikely to cause disability. Hydrocephalus is a build-up of C.S.F. (cerebro-spinal fluid) in the brain, and many people with Spina Bifida have Hydrocephalus. See Hydrocephalus for more information.
Useful national contacts	Shine www.shinecharity.org.uk Helpline: 01733 555988 Scottish Spina Bifida Association www.ssba.org.uk
Children & young people	Vaccines for children with spina bifida (Shine) www.shinecharity.org.uk/advice-for-parents/vaccines Advice for parents (Shine) https://tinyurl.com/y2avzs3d Preparing for adult life (Contact, charity for families with disabled children) https://contact.org.uk/advice-and-support/preparing-for-adult-life
Online resources	Covid 19 (Coronavirus) - Information for Shine Members (Shine) www.shinecharity.org.uk/news/news/post/130-coronavirus-information-for-shine-members Spina bifida (NHS Choices) https://tinyurl.com/yd9ehdfa Spina bifida (Contact, charity for families with disabled children) https://tinyurl.com/rzegfpr Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Spina Bifida and on a wide range of disability-related issues.

Spinal Cord Tumour

Name	Spinal Cord Tumour
Related to/Also known as
Symptoms of Spinal Cord Tumour	Spinal cord tumours are abnormal growths of tissue within the spinal column and are mostly benign. They tend to develop very slowly and worsen over time, unless treated. Symptoms include pain, sensory changes, and motor problems.
Types
Useful national contacts	Spinal Cord Tumour Forum www.spinalcordtumour.org.uk Email: This email address is being protected from spambots. You need JavaScript enabled to view it. Brain & Spine Foundation www.brainandspine.org.uk Helpline: 0808 808 1000
Children & young people	Brain and Spinal Tumours (Children With Cancer UK) https://tinyurl.com/y64efjj4 Advice on coronavirus for families affected by childhood cancer (Children With Cancer UK) www.childrenwithcancer.org.uk/childhood-cancer-info/coronavirus-advice
Online resources	Advice for people at high risk - Coronavirus (COVID-19) (NHS) www.nhs.uk/conditions/coronavirus-covid-19/advice-for-people-at-high-risk Spinal cord tumors (U.S. National Institute of Neurological Disorders and Stroke) https://tinyurl.com/y8egqnkm Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Spinal Cord Tumour and on a wide range of disability-related issues.

Spinal Dysraphism

Name	Spinal Dysraphism
	see Spina Bifida

Spinal Injuries

Name	Spinal Injuries
Related to/Also known as
Symptoms of Spinal Cord Injury	Spinal Cord Injury (SCI) is damage to the spinal cord, which results in a loss of function, such as mobility or feeling. Most spinal cord damage occurs as a result of physical injury, such as car accidents, gunshot, falls etc. The level of injury and extent of paralysis depends on where the spinal cord was damaged and how severely. The spinal cord is divided into four sections: Cervical (C) - the neck region Thoracic (T) - the chest region Lumbar (L) - the lower back region Sacral (S) - the tailbone region Each of these regions has a number of vertebrae and spinal nerves, and thus the site of the damage may be described as, for example, L3, or C 4.
Types
Useful national contacts	Legal Advice through The Brain Charity Spinal Injuries Association (SIA) www.spinal.co.uk Helpline: 0800 980 0501 • The Merseyside Spinal Injuries Group meets at The Brain Charity Brain & Spine Foundation www.brainandspine.org.uk Helpline: 0808 808 1000 Aspire: supporting people with spinal injury www.aspire.org.uk Tel: 020 8954 5759 Back Up: for everyone effected by spinal cord injury Tel. 020 8875 1805 www.backuptrust.org.uk CSF Leak Association Charity working to raise the profile and support understanding of cerebrospinal fluid (CSF) leaks, and provides support to sufferers and carers. www.csfleak.info
Children & young people	Support for children and young people (Back Up) https://tinyurl.com/y6qqzowd
News and Events	Being Frank: The Frank Gardner Story (BBC, November 2020) Frank talks about his spinal injuries www.bbc.co.uk/programmes/m000p3p4
Online resources	Coronavirus shielding and vaccination (Spinal Injuries Association) www.spinal.co.uk/news/coronavirus-shielding-vaccination Coronavirus and SCI (Spinal Injuries Association) www.spinal.co.uk/coronavirus What is a spinal cord injury? (Spinal Research) www.spinal-research.org/injury/what-spinal-cord-injury Understanding spincal cord injury (Spinal Injuries Association) www.spinal.co.uk/learn/understanding-sci Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Spinal Cord Injury and on a wide range of disability-related issues. Visit our library to read the booklet Spinal cord injury by the U.S. National Institute of Neurological Disorders and Stroke (NINDS).

Sticky Blood Syndrome

Name	Sticky Blood Syndrome
	see Antiphospholipid Syndrome (APS)

Stiff-Person Syndrome

Name	Stiff-Person Syndrome (SPS)
Related to/Also known as	Stiff man syndrome Moersch-Woltman syndrome Progressive encephalomyelitis with rigidity and myoclonus (PERM)
Symptoms of Stiff-Person Syndrome	"Stiff person syndrome (SPS) is a very rare disease affecting only one or two people per million. It causes progressive muscle stiffness and painful spasms that can be triggered by a variety of things including sudden movement, cold temperature or unexpected loud noises." Source: Johns Hopkins Medecine (U.S.) "SPS does not appear to differentiate between sex, colour, or creed, although UK evidence tends to suggest women are more likely to fall victim to SPS. SPS is a neurological condition believed to be of auto-immune origin. It is unique among neurological diagnoses due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. Because of its rarity, many neurologists and GPs are not aware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression. The onset is most frequent between the third and fourth decades of life." Source: Genetic Alliance UK
Types	Classic SPS Focal SPS Jerking SPS
Useful national contacts	SPS Support Group (Stiff Person Syndrome UK and Ireland Support Group and Charity) Tel: 01482 868881 Email: This email address is being protected from spambots. You need JavaScript enabled to view it. https://lizblows.wixsite.com/spsuk
Children & young people	"Reports of pediatric-onset stiff-man syndrome (SMS) are rare. This may be an underrecognized disorder in child neurology practice." (U.S. National Center for Biotechnolocgy Information) www.ncbi.nlm.nih.gov/pmc/articles/PMC4819072
News and Events	"Diagnosed with stiff person syndrome" (Sharing Mayo Clinic News, April 2019) https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-diagnosed-with-stiff-person-syndrome
Online resources	Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 Stiff Person Syndrome (NORD, U.S. National Organization for Rare Disorders) https://rarediseases.org/rare-diseases/stiff-person-syndrome Stiff person syndrome (U.S. Genetic and Rare Diseases Information Center) https://rarediseases.info.nih.gov/diseases/5023/stiff-person-syndrome Stiff-Person Syndrome (U.S. National Institute for Neurological Disorders and Stroke) www.ninds.nih.gov/Disorders/All-Disorders/Stiff-Person-Syndrome-Information-Page Living with a condition (The Brain Charity)
Our resources	The library at the Brain Charity has a range of resources on a wide range of disability related issues.

Stroke

Name	Stroke
Related to/Also known as	Subarachnoid Haemorrhage (SAH)
Symptoms of Stroke	A stroke occurs because of disruption to the blood supply to a particular area of the brain, causing damage to that area of the brain. • The British Deaf Association has information in BSL about Stroke. FAST test Face: Can the person smile? Has their face fallen on one side? Arms: Can the person raise both arms and keep them there? Speech problems: Can the person speak clearly and understand what you say? Is their speech slurred? Time: if you see any of these three signs, it's time to call 999. Source: Stroke Association
Types	Ischaemic Stroke - caused by an interruption to the flow of blood to the brain, and is the most common type. Haemorrhagic Stroke - results from arterial bleeds, rather than obstructions to the blood flow. Transient Ischaemic Attack (T.I.A.) - often called a mini-stroke, and can be warning symptoms leading to a full stroke.
Useful national contacts	Legal Advice through The Brain Charity Stroke Association www.stroke.org.uk Helpline: 0303 303 3100 Find your local support group: https://tinyurl.com/y9opk5au • Stroke Friends: stroke and aphasia support group meets at The Brain Charity Different Strokes Provides support to families where either a child has had a stroke or a child is affected by the stroke of a parent Helpline: 0845 130 7172 www.differentstrokes.co.uk Find your local support group: https://tinyurl.com/yc727ob Chest Heart & Stroke Scotland Freefone advice line nurses: 0808 801 0899 www.chss.org.uk Blood Pressure UK Phone 020 7882 6218 Email This email address is being protected from spambots. You need JavaScript enabled to view it. www.bloodpressureuk.org
Children & young people	Different Strokes Provides support to families where either a child has had a stroke or a child is affected by the stroke of a parent Helpline: 0845 130 7172 www.differentstrokes.co.uk Find your local support group: https://tinyurl.com/yc727obs Childhood stroke (Stroke Association) There are over 400 childhood strokes a year in the UK, affecting babies [neonatal stroke], children and young people. www.stroke.org.uk/childhood-stroke SameYou charity for young adults with brain injury and stroke www.sameyou.org All about stroke: information for children (Stroke Association) www.stroke.org.uk/resources/all-about-stroke-information-children
Online resources	Stroke and the coronavirus vaccine (Stroke Association) www.stroke.org.uk/finding-support/stroke-and-coronavirus-vaccine Information on coronavirus for stroke survivors (Stroke Association) www.stroke.org.uk/finding-support/information-coronavirus-stroke-survivors Coronavirus information for people affected by stroke (Stroke Association) www.stroke.org.uk/news/coronavirus-information-people-affected-stroke Coronavirus information and support (Chest Heart & Stroke Scotlans) www.chss.org.uk/coronavirus/coronavirus-advice Wearing a mask or face covering (Stroke Association) www.stroke.org.uk/finding-support/wearing-mask-or-face-covering How to do the FAST test https://youtu.be/-8saTsVFFr4 via @TheStrokeAssoc #ActFAST Physiotherapy works: Stroke (Chartered Society of Physiotherapists factsheet) www.csp.org.uk/search/all/stroke Writing Exercises For Stroke Patients to Improve Agraphia (FlintRehab) www.flintrehab.com/writing-exercise-for-stroke-patient "Game your brain: the new benefits of neuroplasticity" (Wired magazine, May 2014) https://tinyurl.com/y7lrce46 "Stroke and migraine: is there a link?" (The Migraine Trust) http://tinyurl.com/y68u46pz Reducing your risk of stroke: information for African and Carribean people (Stroke Association) www.stroke.org.uk/resources/reducing-your-risk-stroke-information-african-and-caribbean-people Information in other languages (Stroke Association) www.stroke.org.uk/our-publications/information-other-languages
News and events
Our resources	The library at The Brain Charity has a range of resources on Stroke and on a wide range of disability-related issues. Visit our library to read Can I tell you about having a stroke? A guide for friends, family and professionals. by Lisa Yaylor. Or have a look in your local library for this book.

Sturge-Weber Syndrome

Name	Sturge-Weber Syndrome
Related to/Also known as
Symptoms of Sturge Weber Syndrome	Sturge Weber Syndrome is a rare neurological condition and is not hereditary. To date, there is no medical explanation as to why anyone is born with Sturge Weber. Sturge Weber Syndrome has many associated problems and symptoms. Sturge Weber is normally (but not always) indicated by a facial port wine stain.
Types
Useful national contacts	Sturge Weber UK www.sturgeweber.org.uk Tel: 01392 464675
Children & young people	Sturge-Weber syndrome (Contact, charity for people with disabled children) https://tinyurl.com/ruxffqd
Online resources	Sturge-Weber syndrome (Epilepsy Action) https://tinyurl.com/ycdokd45 Sturge-Weber Syndrome Information Page (U.S. National Institute of Neurological Disorders and Stroke website) https://tinyurl.com/y9o8hg6h
News and events
Our resources	The library at The Brain Charity has a range of resources on Sturge Weber Syndrome and on a wide range of disability-related issues.

Subarachnoid Haemorrhage (S.A.H.)

Name	Subarachnoid Haemorrhage (SAH)
Related to/Also known as	See also Aneurysm, Arteriovenous Malformation, Stroke
Symptoms of Subarachnoid Haemorrhage	A subarachnoid haemorrhage is an uncommon type of stroke caused by bleeding on the surface of the brain. It's a very serious condition and can be fatal. SAH is a sudden bleeding over the surface of the brain, under the arachnoid layer. Bleeding usually originates from a ruptured aneurysm or an arteriovenous malformation (AVM). The most common symptom is a sudden, severe headache, often followed by a loss of consciousness.
Types
Useful national contacts	BASIC (Brain and Spinal Injury Charity) www.basiccharity.org.uk Phone: 0161 707 6441 Brain and Spine Foundation Helpline: 0808 808 1000 www.brainandspine.org.uk CSF Leak Association Charity working to raise the profile and support understanding of cerebrospinal fluid (CSF) leaks, and provides support to sufferers and carers. www.csfleak.info • The Liverpool Brain Haemorrhage Support Group meets at The Brain Charity's Coffee Morning
Online resources	Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 Subarachnoid haemorrhage (NHS Choices) https://tinyurl.com/yc6la6x4 Subarachnoid haemorrhage (Brain & Spine Foundation) https://tinyurl.com/c5awsbb Sub-arachnoid haemorrhage (Salford Royal NHS Foundation Trust) https://tinyurl.com/y9gbszoh
News and events
Our resources	The library at The Brain Charity has a range of resources on Subarachnoid Haemorrhage and on a wide range of disability-related issues. Visit our library to read A Dented Image: Journeys of recovery from Subarachnoid Haemorrhage by Alison Wertheimer. Or have a look in your local library for this book. The Brain Haemorrhage Support Group meets at our centre in Liverpool several times a year www.bhsupport.org.uk Email: This email address is being protected from spambots. You need JavaScript enabled to view it. Tel: 07821 620165

Syringomyelia

Name	Syringomyelia
	See Chiari malformation

Systemic Lupus Erythematosus (S.L.E.)

Name	Systemic Lupus Erythematosus (SLE)
Related to/Also known as	Lupus
Symptoms of Lupus/SLE	"SLE is a chronic disease which affects one or many tissues of the body: Skin, joints, mucles, blood vessels, blood cells, brain and nerves... "Inflammatory and immune responses account for many of the symptoms observed in systemic lupus." Source: Lupus UK
Types	Discoid lupus (DLE) Systemic lupus erythematosus (SLE) Drug-induced Lupus (DILE)
Useful national contacts	Lupus UK Tel: 01708 731251 www.lupusuk.org.uk Find a support group near you: www.lupusuk.org.uk/regional-group-finder/ Lupus Trust Tel: 020 7188 3562 www.lupus.org.uk Hibbs Lupus Trust Tel: Freefone 0800 633 5118 Monday to Friday from 9 a.m. to 5 p.m. www.hibbslupustrust.org
Children & young people	Lupus (KidsHealth) https://kidshealth.org/en/teens/lupus.html Pediatric Lupus: Different than in adults (Lupus Trust) https://tinyurl.com/y3vwty54
Online resources	Lupus and Covid-19 vaccination (Lupus UK) www.lupusuk.org.uk/covid19-vaccination Lupus & Coronavirus (COVID-!9) (Hibbs Lupus Trust) www.hibbslupustrust.org/coronavirus Lupus (NHS Choices) https://tinyurl.com/q88arwm Lupus (SLE) (Versus Arthritis) https://tinyurl.com/vzs5yk7 Living with a condition (The Brain Charity)
News and events
Our resources	The library at The Brain Charity has a range of resources on Lupus/SLE and on a wide range of disability related issues. This includes the Lupus UK booklet The diagnosis of Lupus.

T.B.I.

Name	TBI (Traumatic Brain Injury)
	See Brain Injury

Tinnitus

Name	Tinnitus
Related to/Also known as
Symptoms of Tinnitus	"Tinnitus is often described as a ringing in the ears. It also can sound like roaring, clicking, hissing, or buzzing. It may be soft or loud, high pitched or low pitched. You might hear it in either one or both ears." Source: Medline Plus (U.S. National Library of Medicine)
Useful national contacts	British Tinnitus Association www.tinnitus.org.uk Find your nearest support group: www.tinnitus.org.uk/find-a-support-group Action On Hearing Loss www.actiononhearingloss.org.uk
Children & young people	Information leaflets for children (British Tinnitus Association) www.tinnitus.org.uk/support-for-children
Online resources	Covid-19 guidance for people with tinnitus(British Tinnitus Association) www.tinnitus.org.uk/covid-19-guidance-for-people-with-tinnitus Social distancing and managing tinnitus (British Tinnitus Association) www.tinnitus.org.uk/managing-tinnitus-in-social-isolation Tinnitus (NHS Choices) https://tinyurl.com/lh8ue4 Tinnitus (Contact, charity for people with disabled children) https://tinyurl.com/vgbuxdp Living with a condition (The Brain Charity)
News and events
Our resources	The library at The Brain Charity has a range of resources on Tinnitus and on a wide range of disability related issues.

Tourette Syndrome

Name	Tourette Syndrome
Related to/Also known as	Tourette's syndrome
Symptoms of Tourette Syndrome	Tourette Syndrome is a neurological disorder characterised by multiple tics, which are sudden, repetitive involuntary movements and sounds. The condition varies greatly in its severity. Children may also have other behavioural problems.
Types
Useful national contacts	Tourettes Action www.tourettes-action.org.uk Helpline: 0330 777 8427 Find your nearest support group: https://tinyurl.com/y7rfbss7
Children & young people	Children & young people (Tourettes Action) Information related to children and young people who have Tourette Syndrome. https://tinyurl.com/y3g4es53
Online resources	Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19T Coronavirus (COVID-19) vaccine (NHS) www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/coronavirus-vaccine Tourette's Syndrome (NHS Choices) https://tinyurl.com/pjswg3p Tourette's Syndrome (TS) (NHS Choices video) A neurologist talks about Tourette's syndrome https://tinyurl.com/y7lqq97r How Tourette's Syndrome affects learning (About Learning Disabilities) https://tinyurl.com/y8aw7ufll Touretteshero (raising awareness and dealing with challenges) www.touretteshero.com The pain of Tourette's: 'I'm always covered in bruises' (BBC, January 2019) https://tinyurl.com/ycacp82s Living with a condition (The Brain Charity)
News and events
Our resources	The library at The Brain Charity has a range of resources on Tourette Syndrome and on a wide range of disability-related issues. Visit our library to read Can I Tell You About Tourette Syndrome? A guide for friends, family and professionals by M. Leicester, T. Phillips-Smith and J. Collier. Or have a look in your local library for this book.

Transverse Myelitis (T.M.)

Name	Transverse Myelitis (TM)
Related to/Also known as
Symptoms of Transverse Myelitis	Transverse Myelitis is a rare neurological disorder caused by inflammation of the spinal cord across one level of the cord. The main symptoms of the disease are reduced muscle strength and altered sensation below the affected area.
Types
Useful national contacts	Transverse Myelitis Society www.myelitis.org.uk Find your nearest support group: http://supportgroups.myelitis.org.uk Brain and Spine Foundation www.brainandspine.org.uk Helpline: 0808 808 1000
Children & young people	When your child has TM (Transverse Myelitis Society) www.myelitis.org.uk/parent.html
News and events
Online resources	COVID-19 and Rare Neuroimmune Disorders (Siegel Rare Neuroimmune Association) Rare Disease UK (RDUK) is the national alliance for people in the UK with rare diseases www.raredisease.org.uk RareShare is a unique social forum, building communities for patients, families, and healthcare professionals affected by rare disorders. www.rareshare.org Living with a condition (The Brain Charity)
Our resources	The library at The Brain Charity has a range of resources on Transverse Myelitis and on a wide range of disability-related issues. This includes the Brain & Spine Foundation's booklet Transverse myelitis.

Traumatic Brain Injury

Name	Traumatic Brain Injury (TBI)
	See Brain Injury

Trigeminal Neuralgia

Name	Trigeminal Neuralgia (TN)
Related to/Also known as	Fothergill's Disease
Symptoms of Trigeminal Neuralgia	Trigeminal Neuralgia is an extremely severe facial pain, which tends to come and go unpredictably in sudden shock-like attacks. The pain is along the pathway of the trigeminal nerve, typically the upper or lower jaw or the cheek, and is usually confined to one side of the face.
Useful national contacts	Trigeminal Neuralgia Association UK PO Box 234 Oxted Surrey RH8 8BE Phone: 01883 370214 Email: This email address is being protected from spambots. You need JavaScript enabled to view it. www.tna.org.uk
Children & young people	Children and young people with TN (Trigeminal Neuralgia Association UK) https://tinyurl.com/sk3ugyc
Online resources	Advice re. Coronavirus (Trigeminal Neuralgia Association UK) www.tna.org.uk/wp-content/uploads/2020/04/Advice-re-Coronavirus-7.pdf Trigeminal neuralgia (NHS Choices) https://tinyurl.com/y8r83hws Trigeminal neuralgia (MS Trust) www.mstrust.org.uk/a-z/trigeminal-neuralgia Trigeminal Neuralgia (NORD, U.S. National Organization for Rare Disorders) Includes details of TNI andTN2, 'classical' and 'atypical' Trigeminal Neuralgia https://tinyurl.com/y28z9njm Living with a condition (The Brain Charity)
Our resources	The library at the Brain Charity has a range of resources on Trigeminal Neuralgia and on a wide range of disability related issues. Visit our library to read our copy of the Trigeminal Neuralgia Association's booklet "Trigeminal Neuralgia: An overview".

Tuberous Sclerosis (T.S.C.)

Name	Tuberous Sclerosis (TSC)
Related to/Also known as	Tuberous Sclerosis Complex Bourneville disease
Symptoms of Tuberous Sclerosis	Tuberous Sclerosis is a complex multi-system disorder, which produces tuber-like growths on the brain. These calcify with age, and can also be found on other organs including the heart, skin and kidneys. It affects people in many different ways and with varying severity.
Types
Useful national contacts	Tuberous Sclerosis Association P.O. Box 8001 Derby DE1 0YA www.tuberous-sclerosis.org Tel: 01332 290734
Children & young people	Tuberous Sclerosis (for Parents) (KidsHealth) https://tinyurl.com/ujs5gyb
Online resources	Coronavirus and TSC: Vaccines information (TSA) https://tuberous-sclerosis.org/coronavirus-vaccines-info Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 Tuberous Sclerosis (NHS Choices) https://tinyurl.com/yb2wzyut Rare Disease UK(RDUK) is the national alliance for people in the UK with rare diseases www.raredisease.org.uk/ RareShare is a unique social forum, building communities for patients, families, and healthcare professionals affected by rare disorders. www.rareshare.org Living with a condition (The Brain Charity)
News and Events
Our resources	The library at The Brain Charity has a range of resources on Tuberous Sclerosis and on a wide range of disability-related issues. This includes copies of Turbo & Scott, a graphic novel aimed at teenagers.

Vertigo

Name	Vertigo
Related to/Also known as	Dizziness Multiple Sclerosis (MS) Migraine Ménière's Disease Chiari Malformation Brain tumour Stroke BPPV (Benign Paroxysmal Positional Vertigo) Labyrinthitis and vestibular neuritis Brain injury
Symptoms of Vertigo	"Vertigo is a symptom rather than a condition. It is defined as an illusion of movement and is a specific type of dizziness which causes the person to feel the sensation that they or their surroundings are moving, even if they are standing completely still. "Some people describe vertigo as feeling ‘wobbly’ or the sensation of spinning, swaying and dizziness. Episodes of vertigo can vary from seconds, minutes to a couple of hours, however bouts of vertigo can last for days. "Vertigo is a symptom of many different conditions and can happen to people of all ages. There are many causes of vertigo and other disorders of balance. It is very important to find out the cause of your dizziness and you should see your General Practitioner for advice, treatment and referral to a specialist if necessary." Source: Ménière's Society www.menieres.org.uk/information-and-support/symptoms-and-conditions/#heading1 "Vestibular migraine (also referred to as migrainous vertigo, migraine-related dizziness, vestibular migraine or migraine with prominent vertigo) is a type of migraine where people experience a combination of vertigo, dizziness or balance problems with other migraine symptoms." Source: The Migraine Trust www.migrainetrust.org/about-migraine/types-of-migraine/migraine-and-vertigo
Useful national contacts	Ménière's Society www.menieres.org.uk Helpline: 01306 876883 Find your local support group: https://tinyurl.com/y9jlvech The Migraine Trust Tel: 020 7631 6970 www.migrainetrust.org The Migraine Trust Information service telephone line is open Tuesday and Thursday 10am – 4pm on 0203 9510 150.
Children & young people	Vertigo (Dizziness) (U.S. Children's Hospital of Philadelphia) www.chop.edu/conditions-diseases/vertigo-dizziness
News and events	Vestibular Symptoms Survey (Royal Holloway University of London) https://research.sc/participant/login/dynamic/A7854673-409F-430E-BED3-DF7D337BB45C
Online resources	link: Coronavirus vaccination (NHS) Coronavirus - information for people with neurological problems (Brain & Spine Foundation) www.brainandspine.org.uk/coronavirus-covid-19 Vertigo (NHS website) www.nhs.uk/conditions/vertigo Dizziness and Balance Problems (Brain & Spine Foundation) www.brainandspine.org.uk/our-publications/booklets/dizziness-and-balance-problems BPPV (Brain & Spine Foundation) www.brainandspine.org.uk/resources/a-to-z/bppv-benign-paroxysmal-positional-vertigo Dizziness (vertigo) (MS Trust) www.mstrust.org.uk/a-z/dizziness-vertigo Balance problems after stroke (Stroke Association) www.stroke.org.uk/resources/balance-problems-after-stroke Vestibular migraine (Migraine Trust) www.migrainetrust.org/about-migraine/types-of-migraine/migraine-and-vertigo Balance Disorder Spectrum www.balancedisorderspectrum.info Living with a condition (The Brain Charity)
News and events
Our resources	The library at The Brain Charity has a range of resources on Vertigo and on a wide range of disability related issues. This includes the Brain & Spine Foundation's booklet "Dizziness & balance problems: A guide for patients and carers".

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